Writing this is very difficult for me emotionally. But I want to share my story with you because I felt that I would never be able to lead a normal life after I was told that I had Ulcerative Colitis. I want to share this story so that others who suffer from these diseases know that they are not alone and that there is hope for a better future.
I was initially diagnosed on August 9th of 2001 at the age of twenty-three. Tears come to my eyes as I remember all of the suffering, all of the medication I was fed, the hospital stays, the late nights spent in the emergency room, the surgeries and most of all the pain. This disease not only caused physical pain for me but it also tormented me mentally. I was quickly falling into a deep depression. And even worse, I wasn’t the only one suffering. My parents and my siblings were heartbroken as they watched me deteriorate physically, mentally and spiritually.
Ulcerative Colitis is a disease that primarily affects the colon (large intestine) and rectum by causing inflammation and ulcers. This inflammation creates the symptoms of Ulcerative Colitis, also known as UC, by emptying more frequently than is normal. Symptoms of UC include bloody diarrhea and rectal bleeding, abdominal pain, loss of appetite, weight loss and malnutrition, loss of body fluids causing dehydration and fatigue. The majority of people diagnosed with this type of Inflammatory Bowel Disease experience these milder symptoms. Others who suffer from moderate to severe UC have symptoms such as severe abdominal pain and cramping, nausea, vomiting and frequent fevers.
My doctors assured me that they would be able to control my symptoms with medication and that I would be able to lead a normal life. They started me on a medication called Asacol (mesalamine). This is a 5-ASA (aminosalicylate) Compound and is the most commonly used drug to treat mild to moderate symptoms of Ulcerative Colitis and its flare-ups. These medications are only effective if they come in direct contact with the inflammation. I was on Asacol for about six months and still didn’t see any improvement in my condition. So the doctors decided to try other drugs. Over the next three months or so I took medications that included Pentasa, Colazol and Rowasa Enemas (5-ASA Compounds), Prednisone and Entocort (corticosteroids), Flagyl and Cipro (antibiotics), 6-Mercaptopurine, also known as 6-MP or Purinethol, and Azathioprine, more commonly known as Imuran (immunomodulators). Not one of these medications worked for me and I was still suffering from the same symptoms I had when I was first diagnosed.
My parents naturally began to worry and were losing their faith in western medicine. In June of 2002 they decided to take me home to India to seek treatment there. I found a homeopathic doctor in India before I left the States. He told me to stop all of my medications and not to get any shots, including malaria shots, before I arrived in the country. Of course this concerned me because I was traveling to a third world country and already had an immune system that was compromised. But because we were losing faith in conventional medicine we thought it best to do what this doctor asked of us. If he was going to treat me I had to respect him and strictly adhere to his plan of treatment. So I went to India, without any immunizations and without any of my medications. After arriving there and meeting this doctor I felt more confident that he would be able to help me. I was put on a homeopathic regiment that included changing my diet, learning to meditate to alleviate stress and taught exercises that I could do after my meals to help my body better digest its food. He also put me on a “medication” that consisted of two small pills that I was to put under my tongue, so that they could melt, twice a day. These pills did not have any man made compounds in them and were completely natural. I was only on this regiment for a few days when I saw a dramatic improvement in my condition. My symptoms disappeared and I began to feel like a normal person again.
Three weeks later I came home from my trip and went to see my gastroenterologist for a routine check-up. He was concerned that I wasn’t on any medication and insisted that I start back on at least one of them for maintenance purposes and to keep me in remission. I started taking Prednisone around the beginning of July of 2002. It didn’t take long before my symptoms began to appear again only this time they were worse. The doctor decided to do another colonoscopy. The results came back and I was told that I had Toxic Megacolon. This is a condition that is life threatening. As a result of this, on August 9th of 2002, exactly one year after my initial diagnosis, I had surgery to have my entire colon removed.
I was taken to the hospital and prepped for surgery. The surgeon explained to me what was involved in the operation and that he was going to give me a “J-Pouch” in place of my colon. To create a “J-Pouch” the small intestine is folded back on itself, thus creating the “J” shape, and reconnected to the rectum. Even though all of this was explained to me I had never had surgery before and was terrified. I remember looking at my mom and dad, as I was walking away with the nurse, and saying to them “it’s ok, I’ll be fine.” I lay down on the operating table, they put a mask over my mouth and nose, told me to take deep breaths and count backwards from one hundred. I made it to ninety-eight. My operation lasted for nine hours.
The next thing I remember I was being rolled into my room. My parents were standing there crying. I must’ve looked like I was in pain so I looked at my dad and said, “It’s ok daddy it doesn’t hurt.” I was lying through my teeth. The pain was excruciating and like nothing I had ever felt before. I was given huge amounts of pain medication and had also gotten an epidural in the operating room right after the surgery. The feelings I felt that day, physically and emotionally, are indescribable. My surgeon came to see me and told me that things would get better once I had healed from the surgery. After eleven days in the hospital I was able to go home, but I couldn’t take care of myself. At the age of twenty-four my mother had to feed me, help me use the bathroom, bathe me and at times put diapers on me because of incontinence. More than anything else I was embarrassed and humiliated by my disease.
Six months went by and I was still suffering. When the symptoms wouldn’t subside the doctor decided to do another colonoscopy. The results from this test came back and I was told that what I was experiencing was “pouchitis,” an inflammation of my J-Pouch. Of course they treated this with more medication and it soon became apparent that I wasn’t going to get well. I was tested for other things and in January of 2003 I was diagnosed with Crohn’s Disease. This is a condition in which the small intestine becomes inflamed and causes symptoms that are similar to those that are experienced with UC. We continued treatment for the pouchitis and I also started medication to treat the Crohn’s Disease. By August of 2003 I had become so ill that my doctors thought it best for me to rest my bowel. In order to do this I had to have surgery again. I was going to be given an ileostomy. In an ileostomy a slight incision is made on one side of the abdomen and a section of the small intestine is brought to the surface. This is called a stoma. It is stitched around so that it remains on the outside of the body and a bag can be worn over it. Once an ostomy is placed waste from the body is no longer excreted through the rectum but collects in the bag. These bags have to be emptied and changed on a regular basis.
This ileostomy seemed to be working for me and I no longer was experiencing the symptoms I had endured before the surgery. I had to make huge adjustments in my lifestyle but I was willing to do this as long as I didn’t have to suffer anymore. I became self-conscious about having to wear a bag and it was affecting my social life and my personal relationships. I didn’t want to be around people because I thought they might be able to see my bag or sometimes I felt like they would be able to smell it. Once again I felt ashamed by my disease. My ostomy only lasted for about six months when I started having problems with my stoma. It would get inflamed, bleed and even herniated at one point. It was obvious that this ostomy needed to be reversed so in March of 2004 I had surgery again. The ostomy that had been placed on the left side of my abdomen was taken down and a new ostomy was created on the right side of my abdomen.
I was becoming weak physically and discouraged mentally because nothing seemed to be working for me. My disease was out of control and there were no options left. So I made the decision to try natural methods again. I changed my diet and started drinking green drinks that were full of vitamins, minerals and probiotics. I was determined to make myself well again. I improved so much using these natural methods that in July of 2004 I was able to have my ostomy reversed and go back to leading a somewhat normal life. I was more energetic, had gained weight and was virtually symptom free. My state of depression began to diminish and I felt confident about my future.
Sadly enough this didn’t last very long either. Again, I became ill with symptoms so severe that I was spending more time in the hospital than I was at home with my family. I became depressed again and felt like I had been robbed of my spirit. At this point I knew that my entire life was going to be changed and that I wouldn’t be able to have the future that I had dreamed of. I had no choice but to accept my disease. With the help of my family and loved ones I was able to regain some state of mental balance and clarity. I learned that whether I cried or laughed, at the end of the day I was still going to be sick. I didn’t want to spend my days in self-pity or fill them with misery, so I began to take things one day at a time and made the best of what I had.
Since then I have had eight more major surgeries, eight more minor procedures and have been put on medications that are used only in severe cases of Inflammatory Bowel Disease. The major surgeries I’ve had include two more ostomies being placed and both of them reversed, three bowel obstructions removed and my gallbladder removed.
The minor procedures I had included having one Power Port placed in my chest. A Power Port is a device that is used for IV (intravenous) lines when veins can no longer be accessed anywhere else on the body. This port was eventually removed because I acquired a serious staphylococcus infection in my blood that nearly took my life.
I had a PIC line placed in my chest so that I could give myself IV medications at home when I was diagnosed with the staphylococcus infection. Previously I also had two PIC lines put in each one of my arms to feed myself TPN (Total Parenteral Nutrition) because I had become so malnourished. All of these PIC lines were eventually removed. I mention these procedures because they are done in the hospital and in my case I was sedated for all of them. Small incisions are made to place and remove these devices and are considered outpatient surgeries.
At one point I was also given a feeding tube (MFT) through my nose. This tube goes through the nose, down the esophagus, into the stomach and continues until it reaches a point in the small intestine called the jejunum. The intention here is to bypass the stomach and put nutrients directly into the intestine. This allows the stomach to rest and alleviates nausea, vomiting and abdominal pain.
Aside from the surgeries and procedures I also acquired other conditions that I still suffer from. Some of these conditions are either side effects of Ulcerative Colitis or Crohn’s Disease or were caused by medications used to treat these disease. These included:
Pancreatitis
An inflammation of the pancreas due to an overproduction of the chemicals lipase and amylase. Pancreatitis causes severe abdominal pain and usually requires admission to the hospital until symptoms subside. My pancreatitis was caused by the medication Azathioprine (Imuran). Because I suffer from pancreatitis I am required to test my blood sugar three times a day and take insulin, as needed, on a sliding scale.
Osteoporosis
I was first diagnosed with osteoporosis at the age of twenty-five. It is a weakening of the bones and usually occurs among older women.
Anemia Due to B12 Deficiency
This is a reduction in the number of red blood cells due to a lack of the vitamin B12, which is necessary for the formation of red blood cells and for normal functioning of the nervous system. Because I lack this vitamin I am required to get an intramuscular injection of it once a month.
Peripheral Neuropathy
This is a loss of sensation on certain areas of the body. I loss sensation in parts of my feet. In my case, this was a side effect of the medication Flagyl. Infections
I acquired countless infections including a staphylococcus infection in my blood that nearly took my life.
Epilepsy
I was recently diagnosed with epilepsy and believe that it was triggered by the use of high doses of medication.
Ulcerative Colitis and Crohn’s Disease affect all areas of your life including having interpersonal relationships and raising a family. Living with Inflammatory Bowel Disease can be difficult, embarrassing and even humiliating at times. The most essential aspect of having control over this disease is accepting it. By accepting it yourself you allow others to become more empathetic and accept it as well.
It is also important to surround yourself with people that are going to have a positive impact on your life. I have parents and siblings that are loving, caring, understanding and compassionate. Even with all of the hardships and challenging experiences I’ve endured I feel very lucky to have the family that I do. Without their support I’m not sure I would have made it through all of this without losing my sanity. I am where I am today because of their selflessness and unconditional love.
I have learned and am still learning to lead a life with minimal stress, to eat right and to exercise in the best way that I can. I’ve also involved myself in support groups for people with Inflammatory Bowel Disease. In doing this I know that I’m not alone. There are others out there who are also suffering because of these diseases. Only they truly understand what I’m going through and are able to offer the kind of support you can’t find anywhere else. I have made a firm decision that no matter what happens or how bad it gets I will not let this disease dictate my life.
